Inspirational stories

Below are some inspirational true stories from nurses who care for people at the end of their life. These stories show how important care, compassion and support are to friends and family as well as the person who is reaching the end of their life.

Lifting the mood

An inspirational audio where we learn how important social interaction and daily activities are in palliative care.

Right to choose

An thought provoking video that explores a person’s right to choose a good end of life for them.

A family perspective of nutrition and hydration in end of life care

My brothers, sisters and I, and our families have been blessed to have grown up with my Polish Uncle, who turned 90 this year, and his Spanish wife of 50 years. We regularly had family get-togethers which always had Polish and Spanish traditions and influences. Whether it was in the home cooking with familiars like white cabbage with vinegar and kabanos (Polish sausage) or the Stolak Stolak (Happy Birthday in Polish) we always sang, the Vodka toasts and the way we always started Christmas Eve with the Polish tradition of Oplatek (where everyone breaks off a piece of special bread and shares it): these traditions have become my family’s traditions too.

My Uncle was forced to leave his mother and younger brother days after the German invasion of Poland in World War II to flee German conscription. From a privileged childhood he went on the run, never taking off his boots for fear of being discovered until he eventually joined the Italian resistance and then the Ally Forces in the tank division before finally settling in England after the war.

Uncle was a lovable rogue. His charm endeared him to the nurses and carers who cared for him in his last weeks of life at the hospice. However frail or fed up he was with his long final deterioration he always found a smile and a little joke or a friendly word for the nurses.

My uncle was relatively fit up until the last 3 months of his life, which he ended up spending mainly in hospital and eventually in the hospice. He lost weight and looked a shadow of his former self.

As he got weaker he preferred drinking using straws and lightweight cups rather than beakers. We, the volunteers or staff would assist him with drinking and feeding as he became unable. Sometimes he would go into an unarousable like coma for hours and then would awake and drink a couple of drinks. I have to admit that his drinks menu extended to a daily Vodka or Whisky and Coke, a supply of which we kept at his bedside. We took great pleasure that he could do this as this reminded us of the Uncle who was always the life and soul of the party.

His and our experiences of his time in hospital were punctuated by mealtimes and the daily food supplies we would bring him. He didn’t complain too much about the hospital food but when one day I brought in some fish and chips he licked his lips and said “These are real chips!” As his appetite reduced, soups, porridge and simple desserts like ice cream, cream caramel and yoghurt became his staple diet. His daily routine of porridge became the meal he ate and enjoyed the most any time of the day. I suppose it also gave him routine and familiarity in his changing and unpredictable landscape. He seemed to enjoy planning dishes for us to bring in for him from home and making mental shopping lists of items required. One day I went off to the shops from visiting him at the hospice to get the brown bread and Polish sausage that he wanted. On my return I prepared two triangles of sandwiches with the crusts trimmed off and arranged them daintily on a plate. He thoroughly enjoyed these but didn’t want any more. Usually offering smaller portions attractively seemed to work better than bringing in full dishes or more than one course at a time. Often when we brought food in for him the next day he would have forgotten he asked for them or decline to eat much, which did become frustrating. However it was worth it for the times he did enjoy it. Often he would refuse food at mealtimes but then if we put something we knew he would like in front of him he would have some and seemed to enjoy it. Sometimes this worked, other times we would get his wrath and a definite “I said No!”

Mealtimes gave us something to talk about, home cooking or treats brought in by us, the signs of our care and love of him and this link with his normality and choice when his body started to become fail and his life changed to the hospital/hospice routines.

My children of 9 and 10 and my nieces and nephews of 14, 5 and 2 all visited Uncle in the hospital and hospice during his final weeks and days. We explained to them what changes they might see in Uncle and in the environment around them and encouraged questions, which we answered as honestly as we could. We got them to draw pictures for Uncle which we hung around his bed. This was important to them and we took them to Uncle’s funeral to put them around his coffin to continue the link of the love they had shown him in life.

Christmas time drew near for us and we all fretted over whether we would enjoy another Christmas together. We used the excuse of my birthday in mid-December to have a Christmas type celebration in his room in the hospice with decorations and pictures drawn by the kids. We sang Christmas carols and of course the Stolak Stolak Polish Happy Birthday song Uncle had taught us all. I am so glad we did that as even though Uncle survived past Christmas he slept deeply most of Christmas Eve and Christmas Day, though we still gathered in his room and did Opatek at the start of our Christmas Eve celebration. We hoped he would wake up but he didn’t. On Christmas Day after lunch I went up to the hospice with my brothers. He was unarousable and had a dry mouth. I decided to give him some mouth care but dipped the sponge into a little glass of vodka. He didn’t stir initially but after 5 minutes he woke up with a confused frown. My brother said he must be hungry and asked what he would like to eat. I interjected protectively saying he needed time to come to but he looked firmly at me and said that he would like some porridge please. When I came back with the prepared porridge he was deeply asleep again and actually he never came to again.

We never became anxious about this inability to eat or drink in his last days as we understood this was to be expected and were reassured that his mouth care kept his mouth moist.

So what would I like nurses to remember with people who are dying about nutrition and hydration?

Make time to support dying people with eating and drinking whatever they want for as long as they are able. This may mean advising other staff and volunteers to make frequent offers of this.

Find out what people would like to eat and what portion size or consistency they can manage. Don’t be afraid to ask family to bring food in, remember it may give them equal pleasure.